The Rest of the Story....

Here it comes. 

The LONG post to catch you up on the remainder of Myles stay at Children's. 

After Myles was extubated, it felt like all the remaining hurdles were easily accomplished. Just good, steady, daily progress. Some days felt so painfully slow, but we constantly reminded ourselves that coming home with no tubes was the goal.  

NICU day 9, Myles was still getting some breathing assistance, but all the settings on the hi flo nasal canula were all minimal. He was eventually downgraded to a low flow unit. He was also working on upping his feeding volume. We were also surprised to walk into the NICU to find him in a regular 'crib'! 

Day 10  I arrived that morning to find Mr. Myles on absolutely NO breathing assistance. ROOM air!! 1 week after surgery and breathing successfully on his own!  Such a big day for him! 

The next few days following were simply working on weaning him off iv meds, upping feeding volume via a feeding tube in his nose. They hadn't tried oral feeds yet as he needed to get used to breathing on his own. 

Days 11-12, I believe it was on day 11 he was finally able to attempt to feed orally. The nurse gave his first feed via bottle. They wanted to keep close eye on that so he didn't go to fast, or aspirate any. 

He did a great job. Whatever he didn't finish in the volume they wanted him to eat, they would finish via the feeding tube. 

Day 13, Sept. 1. We were FINALLY given the OK from the surgeons to try breastfeeding! Up until this point I had to pump every 2-3 hours around the clock to ensure I had milk for him. I hated pumping when my older 2 were babies, so this truly was a labor of love for Myles. Breast is best, especially for high needs babies. I wanted so much to be able to give him breast milk, and eventually breast feed. CDH babies usually have a harder time with that, if they are even able to get that far. It was a big personal prayer of mine.  

Up until this day he had only been feeding orally for 2 days or so, and had only been given an occasional pacifier when he was fussy and appeared to want to suckle.  

It was such a joyful day to be able to finally try what should be done right after birth. 

Another HUGE answer to prayer. This boy was 'genetically designed to breastfeed', as a lactation consultant put it. He latched on perfectly the first time, and was able to successfully feed for awhile. He timed his breathing and swallowing perfectly.  Now it was merely a matter of gaining the strength and endurance needed to do his full feeds orally. 

Day 15, Sept. 3. BIG DAY!  Myles was finally getting his full volume feeds successfully. He still needed to finish the volume via the NG tube. He was taken off all IV nutrition, and no longer needed any IV's. Since the last health concern left was feeding, they decided to move him from the NICU. 

That afternoon Myles was moved up to the Neonatal Progressive Care Unit (NPCU).  Up there he had his own room rather than just a pod. Also, parents were welcome to stay overnight in the rooms, which would facilitate him perfecting his nursing since I had planned to nurse exclusively when we got home. We were so happy with this big step!! 

Day 16, Myles did his first FULL feed at the breast. A day or so later the surgeons approved that I could start feeding 'ad lib' ( on demand) rather than their strict every 3 hours schedule. He was doing fabulously with his feeds and no longer needing to use the NG tube. 

Day 17, Sept. 5  I was helping a nurse undress Myles for a weight check during a late night check in. 

I grabbed his sleeper in one hand, and unbeknownst to me, his feeding tube was in where I couldn't see it.  When I 'yanked' his sleeper out from underneath him, out came the NG tube all in one motion. I felt so stupid! I know he hadn't been using it for a day or so, and he was fine without it, but feared they would reinsert it anyway since it hadn't been officially cleared to remove it. 

Praise God, they left it out!!  Now he was a 'tube free' baby!! 

Day 18, Saturday Sept. 6   The Drs and Surgeons began talking about discussing discharge possibly that following week, 'Maybe Tuesday' they would say. We didn't tell a soul since we know how quickly things change there! 

Day 19, Sunday Sept 7,   We were given assurance that they were now planning on discharging Myles the next DAY!!  He was doing all feeds perfectly, and gaining weight steadily.  No breathing issues, or alarms on any of his 'leads'.  We were pinching ourselves and beside ourselves with excitement!! 

Day 20!!! Just shy of three weeks old!  Monday Sept. 8. 

DISCHARGED!!!  Such an enormous answer to prayer.  We were told prior to his birth that we should expect a stay of 6 weeks or longer. We began to claim the verse Psalm 81:10. 

" ....I am the Lord your God, ..., Open  your mouth wide, and I will fill it."  We began to pray for a hospital stay of 4 weeks. God answered beyond our expectations!! He cut the doctors estimated stay in HALF! He gets all the Glory for Myles in every way. We are so thankful for how He used the surgeons and doctors and nurses, but we know the Lord enabled our little guy to be a strong fighter. Praise HIM!!! 

It was such a blissful feeling to be all together at home. I thought I would feel nervous without all the monitors for reassurance. That was not the case at all. Just one healthy little boy at home where he should be. 

What a journey.  

What a boy. 

What an AMAZING GOD !!